[When I stood before my guest blogger ‘s SCAR portrait at the first SCAR Project Exhibition in NYC in 2010, it was the first time I really faced another woman whose [Surviving Cancer.] [Absolute Reality.] looked like mine. I knew so little about breast cancer when I was diagnosed in 2008, that I didn’t know that no reconstruction was even an option any woman ever opted for. The one woman I knew who’d had a double mastectomy, did it prophylactically with immediate reconstruction. In my case there weren’t really options. The best course of action was to wait until after surgery and chemo, to evaluate the reconstruction question: 2B or not 2B? When I met Toni at the Cincinnati Exhibition I produced in 2011, she was still the only other woman I knew who had been there, done that, had to buy a flat new t-shirt like me. I was eager to learn her story and to share it here. Now, especially in light of the recent Facebook controversy over SCAR images, and of upcoming exhibition news, I’ve asked my flat and fabulous SCAR sister Toni G. to share her SCAR story. Here is the first of two parts.]

Guest Post by SCAR girl Toni G.

I was sitting in a tent at Zion National Park when I got the news. The voice of the surgeon who had biopsied a mass in my breast the week before came through my cell phone: “We need to talk”. My heart sank.

I had breast cancer. I was 28 years old.

I’d already planned out my vacation to Utah for the spring of 2007 to celebrate passing the doctoral candidacy exam—a feat that would allow me to continue pursuing my Ph.D. in Molecular Biology and Biochemistry. But experiments didn’t cooperate, and I’d had to postpone the exam and take my “celebratory” vacation beforeI even answered one question.

And now this woman was on the phone saying words horribly foreign to me. ER+/PR-/Her2-. Grade 2. BRCA1/2-. Two IDC tumors measuring 3 and 5 cm.

More unfamiliar terms followed as she proceeded to tell me the course of treatment. I sat in silence while she described, in what seemed like one breath, oncologists, mastectomy, chemotherapy. When she spoke the word radiation I finally lost it.

My space-time continuum had just been warped by the gravity of cancer.

She wanted me to see an oncologist that day, but I was 1500 miles from home and a week away from my return flight. I told her I couldn’t that day. Or the next few. I had rented canyoneering equipment for the day and had miles of hiking to look forward to. I would be home in a week. I didn’t call my family. I couldn’t bear to tell them the heaviest news of my life over the phone.

The one phone call I did make was to the chair of my committee. My candidacy exam would have to be further postponed. It turns out, indefinitely—but that’s another blog.

The months following diagnosis were surreal. I’d become so used to people telling me that 20-somethings don’t get breast cancer that I found it hard to believe I actually did.

When I was 20, I found a lump in my breast. My surgeon insisted it was a cyst. No tests? No biopsies? Nope. When the pathology came back benign, I sensed an “I told you so.” He told me that even if I discovered more cysts in the future, I wouldn’t have to have them removed. “They’re normal,” he said.

“They’re normal,” I thought eight years later as I stood naked in front of the mirror slowly tilting my head and squinting. My left nipple looked odd and had gone flat. My gynecologist thought the scar tissue from my cyst removal was causing it. She never mentioned the words breast cancer.

Over the next few months I began to feel a mass in the same breast. I called my gynecologist’s office again and was told to call back in six months to follow up. I convinced myself it was just another one of those normal cysts. So I didn’t worry—for seven long months. By then, the two masses in my breast were causing sharp shooting pains across my chest. The (finally) worried gynecologist ordered a biopsy.

And then I was in Utah, sitting in a tent…

When I did finally go home and called a family meeting, Dad was giddy. “You’re getting married!?” No, Dad. “You’re having a baby!?” No, that’s not it either. It made the truth more crushing.

My oncologist started me on chemotherapy immediately because the tumors were so large. He ordered a CT scan that came back with abnormal spots in my femur and four places in my spine. After a follow up PET-CT scan, I received a second blow. The spots were metastasized breast cancer.

I was now stage four.

I wasn’t concerned at first. My ignorance of metastatic breast cancer shielded me. But after a week of reading through scientific literature, I found myself shutting my laptop every night in tears, unable to handle any more statistics. Based on my research, I knew I only had a 25 percent chance of being alive in five years.

My oncologist said nothing had changed—not our treatment strategy or my life expectancy. I knew then I had to change oncologists. My life depended on it.

I found my second oncologist at MD Anderson. She cited current literature and was willing to be as aggressive as I wanted with my treatments. She understood my drive to do absolutely everything I could to get rid of the beast that was trying to pull me down.

“Absolutely everything” turned out to be the hardest experiment of my life. Seven months of chemotherapy, a bilateral mastectomy, a clinical trial with high dose chemotherapy and stem cell transplant, and six weeks of skin-scorching radiation to top it off.

It worked. I was declared to have “no evidence of disease”!

Just one week after I finished my treatment, I hiked to the top of the Continental Divide in Colorado. After hours of plodding through the snow and a chance encounter with a majestic mountain goat, I found myself sitting at the top of the mountain. Bald and burned and brave. I had defied gravity. I had defied cancer!

[All this defying of cancer and, most likely, more gravity as well, will be continued in Part 2 of Toni’s SCAR story, in which she considers the geography of cancer.]

[Today’s guest blogger is no stranger to The SCAR Blog. When Facebook removed some of the SCAR images this time last year, Sara wrote an open letter to Mark Zuckerberg on her BLOG which I cross-posted here, with her permission. When quite a few of the SCAR girls were making preparations to head south for The SCAR BAMA exhibition, Sara wrote about it on her blog and once again I snagged it for reprint HERE (again, with her permission) because the SCAR sisterhood, which her article provides a lovely glimpse into, is one of the many beautiful things that has evolved from David Jay’s The SCAR Project Exhibit that many might be unaware of. When Sara got back from The SCAR BAMA exhibition, she wrote a beautiful recap on her blog, which of course also landed HERE, because she’s a generous soul like that, not to mention a dear friend. At which point I played both those cards in the latter part of the previous sentence and told her I thought with 3 SCAR blogs under her belt it was probs time for her to share her story. Of course, she did. And here it is. Thank you, Sara, love!]

by Sara Bartosiewicz-Hamilton

12/12/12…I call it my lucky day…the day my life started over. I had no idea how true this would be. Leading up to the 12th day of the 12th month of the 12th year, I was filled with anxiety, ready to have it over…at the same time, I wondered if I was sure. I kept telling myself, if ever I think I’m not ready, I’ll pull the plug…I still showed up. I started tearing up as the nurse prepped me for the surgery. She asked if I was okay.Yeah. She asked if I was sure I wanted to do this. Yeah. She said, it doesn’t make it any easier, does it? And that’s exactly what it was…I knew in my heart and my head it needed to be done…but knowing it, believing it, didn’t make it easier. Much like the beginning of this journey.

I was tested for a gene mutation in the fall of 2006. I knew I had a 50/50 chance of having the mutation…my spirit was prepared to hear I was positive. And I was. I was told I had the BRCA2 mutation and, through tears, I responded by asking the genetic counselor to set me up with what came next. She was confused. I was only 29, surely I could wait, surely I didn’t need to do anything until I was 40. Genetic testing was not new but it was not common yet either…I was the youngest person she had tested. I knew what I needed to do. I wanted to have a mastectomy. Take out the tissue that had an 85% chance of turning on me. Get it out, let me live my life. Let me give up this fear.

Fear. Our family tree of cancer explains my fear. In my mind, it was a matter of when, never a matter of if. I was surprised by some of the backlash I received from my choice to have a prophylactic mastectomy. I was naive. I was young. I didn’t realize there was a lot of fear behind that anger…sometimes, guilt. I couldn’t handle it so I shut myself away. I tried to find someone, anyone on the internet. My oncological surgeon told me she knew there were other young women choosing to have PBMs…I just couldn’t find any. I was isolated. Friends closest to me told me I shouldn’t do it if I couldn’t be happy. Happy? Was that what I was supposed to feel? I wasn’t sure what I was supposed to be happy about. This wasn’t a boob job. This was the removal of my body parts…my tissue ripped out of my body. And replaced…a plastic mound shoved under my muscle. A plastic mound that would grow over time as I was injected with more fluid, that would continue shoving my muscle around. And all of this to evade cancer…that may eventually come for me anyways.

Sara (29) and her daughter Ms P one week after her prophylactic bilateral mastectomy in Jan. 20007

A girl found me on MySpace. She was the one who told me about the SCAR Project and she asked if I wanted to meet her and a couple other girls in NYC to be photographed. I looked up the website and was speechless. I was looking at young women…I was looking at me. I immediately reached out to David Jay:

David~ I would like to be involved…I have never had breast cancer but have the BRCA2 gene (mutation). I had a prophylactic mastectomy at 29 because the gene (mutation) gave me an 85% chance of getting breast cancer. I understand your project is for women who have fought breast cancer but I thought I would volunteer in case you could use me as well. Regardless, I look forward to seeing the finished project. When I was getting ready for my surgery, I was desperately searching for what I would look like afterwords. I couldn’t find pictures of young women…this is powerful. Thank you.”

I was so excited (and terrified at the same time) when David wrote back and asked me to come. I wanted to participate because I wanted there to be a photo. I wanted the next 29 year old to be able to find my photo and be able to find the courage to have a PBM…to know she was going to be okay. I was terrified because I was going to be photographed. Because there would be a photo of me…there was going to be a photograph of my scars. There was going to be a photograph documenting myimperfection…

It didn’t help when I received an email that it may be best to wait. When I asked why, I was told he was receiving emails and he wasn’t sure what to think. I was devastated. And then I was enraged. I received a copy of the email because my sister went to bat for me and was sent a copy of the email:

Please re consider the shooting of Sara… She is Not appropriate for this project. she NEVER Had cancer. She only took off her breasts as prevention!!! Everyone in her friend circle and family knows that she is not stable to do this!!!! She does things like this for attention. Who??? Has a DOUBLE MASTECTOMY at age 30 when NO cancer is present??? Someone who is not STABLE. Her mother has NEVER had cancer. Her GRANDMOTHER has NEVER had cancer. This is not the same as your other candidates. PLEASE DO NOT encourage her behavior… Now. I say this with love but as you can understand MANY of us are tired of her charades. And having her half naked in a magazine for us all to explain to people who are AWARE that she NEVER had cancer in the first place. It makes a mockery of those women who have actually almost lost their lives.”

It was obvious to me this was not someone closest to me – my grandma did, in fact, have cancer, she had died of cancer. On the flip side, to be honest, I think it hurt so much because I wondered myself. Am I the only one who goes through a double mastectomy at 29 (ahem, NOT 30) without there being cancer present? As I tried to explain the untruth throughout the email, I expressed that I had been wrestling with guilt. Guilt that my choice was done out of fear…guilt that I was a sissy because I was too afraid to get cancer.

When I finally made it out to NYC, I had a lot on my mind. I had also received emails from this same person spewing ugly things. At that time in my life, I was unable to recognize that sometimes people are ugly because of what is inside of them…and it has nothing to do with me. I was unable to detach from their words, unable not to internalize them. While it didn’t stop me from going, it made me pause. Was I doing the right thing? I was the last girl to be shot that day. I arrived after everyone was done being photographed (read: dressed). I sat down and had my make-up and hair done and then it was time. The point at which I was taking off my shirt, it seemed like a really crazy idea. Other than my doctors, my hubby was the only one who had seen the scars and he saw them with the security of a dark room and, even then, I did what I could to hide them. I was asked beforehand to bring something that had meaning or relevance to my shoot. I brought a charm with a picture of my littles on it and I also brought a photo of my mom and two of her sisters. I had something which explained without words the reason for my prophylactic bilateral mastectomy and I had something to explain why I would choose this. David went with the photo of my mom and two of her sisters. I’m so thankful he did – for all of time, my photo explains the family ties and the multiple generations our mutation has affected.

Sara’s SCAR Portrait taken in Dec. 2007, about a year after her PBM

Something happened at my photo shoot. Something I was not even aware of yet. I found a place where I belonged. A place of acceptance. A place of understanding. A place of love. I am forever thankful for my first SCAR sisters. They helped me embrace that my story was valid…they helped me see I was accepted into their “club” without having cancer. They helped pull me back on my feet when I didn’t even realize I was floundering. And they helped me grow taller that day. They were impressed by my courage and strength. I didn’t believe them quite yet but I held onto them, hoping they were right.

Fast forward a few years. It seemed surreal as I sat across from someone I called my best friend and heard similar words of ugliness being flung at me. Ironically, it was my five year “boobiversary” – five years after my mastectomy and I was being assaulted with words. Self-mutilator. In need of a therapist, not a surgeon. I had just disclosed I was planning on removing my implants. It was something I had been quietly considering for a while. I had not talked about it with many people: hubby, my plastic surgeon and with one of my SCAR sisters at the Cincinnati exhibit. I was having daily discomfort and pain and was hopeful that having my implants extracted would help relieve this. I was at the point of being ready to schedule the surgery and wanted the moral support of my friend…my “best” friend. I was caught off guard. The me who showed up for my PBM would have allowed this assault to continue until completion…the me who spent the past couple years embracing my new reality was strong enough to say stop…strong enough to walk away. Unfortunately, not before internalizing some of the accusations. I delayed my extraction for another year. I lived with the discomfort and pain as I searched my soul. I couldn’t deny what I was feeling but was I sure having my implants removed was the right choice?

I was back in Cincinnati when I had the courage to say it was time. I came home and the first conversation hubby and I had was that I wanted to schedule the extraction. It seemed like more than coincidence, perhaps a sign from the universe, when I was opening the mail immediately after our conversation and I opened lab results from my doctor confirming an autoimmune disease. When I had my pre-surgery appointment with my plastic surgeon, it was both amusing and sad to hear my plastic surgeon ask me what had taken so long. He told me he could tell this was the right choice for me…over a year before.

Fast forward to 12/12/12. My life truly did start over. When I woke up from surgery, the discomfort was gone. As my body healed, so did my spirit. I noticed I started looking at myself in the mirror without the little black box to censor what I was seeing. I realized I was the most comfortable I had been in my own body since my mastectomy. I found myself forgetting about the extraction and am no longer reminded daily of my surgeries, my BRCA mutation, or my lingering fear cancer will find me. Life started over, no longer hindered by the past.

I have been incredibly blessed – I always had someone in my corner. And, as my journey progressed, that corner became fuller and fuller. I choose to include the pain and judgment of the past because it is, unfortunately, what many women in my shoes continue to hear. However, while those hurtful words have no power over me, they give me the ability to reach out to someone else and say, I understand. I heard that too. I am hopeful that sharing will also help those who would place judgment to step back and recognize, it’s okay if you would never make the choices I made but it doesn’t give you the right to try to say you could live my life better than me. When I look back, I remember vividly the isolation I felt before my prophylactic mastectomy and again, feeling in the extreme minority as I was considering my extraction. I don’t ever want any woman to be completely alone. I recently started a Facebook group with my fellow SCAR sister Barbie – it’s called Flat & Fabulous. We are actively on the hunt for our fellow sisters who have had a mastectomy and, for one reason or another, do not have reconstruction. It has been both validating and heart breaking as I get emails from a stranger telling me she never knew there was someone else like her. Our page offers support, encouragement, and LOTS of laugh as we all go forward with living our new reality.

I recently wrote about The SCAR Project Exhibition in Birmingham and Joules texted me to ask if I would share my article here on The SCAR Project blog. About five minutes after she told me it was up and asked me to proof it, I received another text that said now that I’d written for the blog THREE times, but had yet to share my own SCAR story… “it’s time.”

So, this is my story. It spans over my lifetime. It starts at my mastectomy. And again at my extraction. I am incredibly thankful for the lessons I’ve learned along the way about love, friendships, life, and what is truly important. Trying my best to Live Sincerely.every.single.day.

Sara’s Live Sincerely Photo (taken with her family last summer) for The Live Sincerely Project